shunt surgery data

There have been lots of posts about how shunt surgery doesn't work or that it only works for 2 - 3 years, but there isn't any hard data that supports that. I would be interested in accumulating data from people that have had the surgery. If you've had shunt surgery (endolymphatic sac decompression with shunt):

Did it work?

Did it last?

Did you experience any symptoms post-surgery?

If it worked for a while, how did Meniere's re-manifest itself?

I'll start. I had shunt surgery 7 1/2 months ago. It worked. I still have dizziness on a daily basis, but not bad. No nausea or vertigo.

Thanks in advance for any replies.

Bob W

 

boyyyy i would be very interested in this post obviously!

GinaMc

 

It's been 2.5 years since shunt surgery. Had one attack three weeks ago, but have been fine since.
IF the shunt surgery is what has resulted in this gap in attacks, then it worked.

 

Hi Bob, and everyone else. Since I had the shunt surgery, and with such different results as the norm, thot I'd chime in on this one.
I had the surgery 9-06-06. It's only been a short time, so did it work?? Don't really know yet, but I believe I'm worse off than before. Lots of dizzy/balance problems. More than I had before the surgery. Shocky feelings when I exert any kind of pressure on my head, like yawning, sneezing, burping, etc. And driving is a nightmare. Unless these symptoms clear up, I'll be sorry I had the surgery. I'll continue posting as time passes, and let you all know if things improve.
Sarah

 

Mine lasted for 3-4 months. I took a week off of work for recovery-teaching, should have taken two weeks to fully recover before returning.

While it was working I was on top of the world, never felt better! The surgery wasn't that bad, home that day, didn't really need pain killers. so all in all it was good, just wish it lasted longer!

Tuck

 

I had shunt surgery 9-30-03
Well it did work for me. I do still have some dizziness from time to time but not as bad. I do have ballance problems but not as bad.
I still have pressure and 24/7 tinnitis but besides all that I guess it has worked for me so far.

 

bump

 

I had shunt surgery July 24, 2006, so I am a new one as well. I too had a difficult recovery, give yourself time and check with your doctor regarding Vestibular Rehab. Therapy. I went and feel it helped with getting me back to a functional being. Take one day at a time. One thing I noticed was when I finally felt up to it I walked outside, first only to the mailbox, then around the block, it seemed to help quicken the recovery when I was finally up to it. It was probably three weeks before I got to that point.

I too will watch this post regarding the effectiveness.

KareBare

 

I had shunt surgery in April, 05. It really did give me a much better quality of life. I was able to continue flying internationally for my job and did really well for about one year. I still had some spinning on occassion with balance problems, and the fullness in the surgery ear. Then four months or so ago, the dizziness started again going up the back of my head and I could feel pressure on the left side (right side was surgery ear). I went back for more tests last week and could not finish the rotary chair, water tests, etc., due to how badly the tests affected me. The Doctor thinks the disease has moved bilateral.

I go back Oct. 11 for a CT Scan and we will decide what to do next. The doctor is talking about taking the shunt out, cleaning everything up again, and trying gt...injections on the orginal surgery ear. I was sort of thinking of the nerve section for the right side -but that is no longer possible since MM has gone bilateral.

It has gotten so bad now that I can only drive certain days and my balance is totally off. I have given up my international job and trying to get something that will allow me to stay at home. The brain fog is so bad some days that I can't work period. The progressioin of the disease is not what I expected. But definitely the shunt surgery gave me a good year!

 

Hi there, I had the Endolymphatic Sac Shunt done in 1988. I had a few spells afterwards, but then I never had any problems with MM for years. I could do anything and eat anything. Before I was throwing up and falling on the floor. I was fine for years, then july of this year, I got systoms again, but this time, I am just having very bad migraines with the dizziness. I am seeing the ENT clinic that did the operation, but the doctor that did the surgery is not there anymore. What they want to do now is called an Intratympanic using Gentamicin. I have done some research on this and have decided that I dont think I want this done. I still have fair hearing in the affected ear and why destroy it. I am requesting to have the surgery done again and then if it lasts as long as the last time, I will be on SSI and not have to worry about paying bills and so forth. As for the shunt, If anyone is thinking about having the shunt surgery done, I would do it. This is just my opinion and my thoughts on the shunt. Hope this helps.

 

Supplyman... wow, that is a long time to go after shunt surgery and not have MM symptoms... very encouraging also... as I have had 3 gent injections done and i am still facing the worst of MM. I had my last injection this past june and hoped I'd do as well as the other two but I didn't. My symptoms started last tuesday... woke up in the morning went to get out of bed and down i went... full vertigo and the nausea to follow... it has been awful.. i went to my ENT on Tuesday afternoon and was started on 5mg of valium to help with the symptoms until they could decide what to do next.... another gent injection or shunt surgery or god knows what... I am so discouraged that I don't know what to do. I mentioned the shunt surgery and they said they wouldn't make a decision until I had another ENG done and a ECOG and Rotary chair test to see exactly what is going on... is it my MM or a possible PLF leak again.. so I am waiting to get in for the tests before they will decide what to do.. in the meantime I stay on my valium and it seems to stop the full blown vertigo.... why is that? strange but I guess it must supress the inner ear or something because it does work.

anyway, thanks for your story as I am hoping to get some answers soon and want to know if others have had the shunt surgery done and what it does to stop the attacks... is it inner ear fluid from MM?? thanks again.

GinaMc

 

I had the sac surgery twice. I think shunt is a misnomer, at least with my doc, as he says they dont' put the shunts in anymore-at least he doesn't. The first time I had the surgery I was completely symptom free for 3 years. For an outpatient surgery I think this was amazing. For the person who had it 9-6, give yourself some time. At first i thought my hearing was worse, and still off balance, but a lot of that was just your body recovering to the surgery area. I felt wonderful after about 4-6 wks! Ate and did anything. Then the symptoms slowly came back. The 2nd surgery I was symptom free for 2 months, but then with the combination of the meniette do very well. My doc says for some it is a cure all, and for others it comes back. I think it is worth the risk for what you go through. My doc also says that it is important to have it done by someone who does this surgery all the time......that if it is not done right it will not help. So go to an expert. I don't know what you have to lose by trying it. I am very happy I did it both times. Hope this helps! Lisa B.

 

These replies are all very encouraging.. thank you to everyone for posting. I am debating as to whether or not to do the shunt surgery or maybe try another Gent injection. My ENT is determing this by putting me thru a series of test.. I had an ENG done yesterday (which came back normal) and I am scheduled for an ECOG and Rotary chair test done .. but i'm not sure what they are looking for... maybe inner ear fluid.. or to determine what to do with me next. I know he mentioned doing the shunt as an option or repeating the gent injection but wanted these three tests done before he could give me any options. For those of you that have had the shunt surgery... how did your ENT make the decision to go ahead and do that... was it based off of just being dizzy or did anybody have these tests done to help decide?? Just trying to figure out what to do next. thanks.

GinaMc

 

Am a newbie, had shunt surgery 1990...it decreased the symptoms some..I went to work,drove,real humanoid behavior...until I fell and smacked my head...that was in 1998..back to square 1..relearning everything..many docs don't think it's useful..again..the placebo effect..did one get better because something was done? or did one improve because the "shunt" worked? Medical dilemma and one many ENT's don't agree on.
Oh..grad improved until..smacked my head again (ya never seen em coming do ya?)..back to square 1..but had cataract surg so symptoms (visual input) is really messed up.. feel a bit better 1 wk..but I remain hopeful..Never will be able to work as a nurse again..tinnitus is much worse in left ear..doc said fall wouldn't dislodge shunt..but tinnitus has been constant since fall..I chose not to pursue it until eyes are fixed..can only deal with 1 or 2 crisis at a time..I'm older..wiser..and pretty much sick of doctors and their opinions..sorry..hope this helps..thanks for lettin me vent

 

I had kind of hoped I'd never have to come back to the board again after surgery, but here I am...

I had my surgery October 2004. The first year was awesome - no attacks and felt like a totally normal human being. Then I started having mild attacks, spaced out, and after several rounds of prednisone now they want to repeat the surgery, almost two years to the day I first had it. Scar tissue is apparently blocking the shunt.

Other than having a leaky ear for a month afterwards and sort of weird hearing, I was fine after surgery.

 

I had shunt surgery at University of Minnesota in January 2004 which failed to help at all. I waited intill October 2004 and saw a different Dr. in Omaha Nebraska who performed a VNS on me. Best thing I ever did. I still have some imbalance but overall I'm about 80% of what my pre MM normal was. Best Dr I've found in the states around Iowa.

 

Hi there, thought that I would let you know my feelings on this. I got MM after I got out of the military. My first trouble started in 1997 and I have a 30% disability with VA due to MM. On July 10, 1998 I had Right Endolymphatic Sac Shunt surgery. I had trouble free years for a long time, I mean it was like it was not there at all. I was working, playing sports, flying to see family and no troble at all. I was hoping that it would last forever, but then came July 17, 2006 and I had an attack. I was off work at the time due to the company was making some upgrades to the equipment. I went back to work and it was all that I could do to keep working. I had to stop working and figure out what to do. I got another job, but it was in a bottling company and it was so noisy, hot, and humid that it did not work out either. Now, I am working with two different doctors, one at the local VA Hospital and and one with my Tricare doctor to have the surgery done again. I miss having the time to do things like I was. I am a little depressed about it, but I am not going to let it get me down. My problem is money right now as I am not married and my family can not help me out. There is jobs to do, but not the way I am right now. Sorry if I seem to be spilling my mind and feelings here. I hope this helps you make a decision, but I would go for it, I am hopefully again. Happy days to everyone, hope chat gets going soon so that we can chat.

 

Thanks to everyone for their replies. I hope this gives people that are contemplating the surgery some insight.

Bob W

 

I am having shunt surgery on Nov. 3rd. I will let you guys know how I do. I am hopeful. Actually it had better work or I will be really really upset. I cannot live like this. It is too awful. I can't lose my only good ear.

 

Did it work?

I had shunt surgery a few years ago. My right ear was in remission and my left ear was acting up. It was the one that had the hearing loss...so doctor performed shunt surgery on my left. I had the best 5 weeks of my life!

Did it last?

Sorry to say that my relief was short lived...after 5 weeks, my world was turned upside down...worse than what it was prior to surgery. If I had to do it again, I would not...and that is my opinion.

Did you experience any symptoms post-surgery?

I experienced more hearing loss and sensativity to noise after surgery. The vertigo attacks were longer and more frequent too. Shortly after my 5 week post-op, my right ear came out of remission. I had hearing loss in each ear, although my left ear was worse. My balance became an issue as well.


However, I will be the first to say that my results may have resulted from being bilateral at the time of surgery...and I also had other health issues that complicated matters. I wanted to share my experience anyway. Some have good luck with the shunt while others do not. Everyone is different and each person needs to make that decision for themself.

I wish all of you that are having the surgery or recovering, the very best! Hang in there!

Stacey